While dating with CMT was an adventure, Heather met her husband Dave in 2005, and they were married in 2009. Heather counts her husband, along with her parents and sister, among her biggest supporters. In 2014, Heather once again triumphed over CMT, losing more than 100 pounds and completing her first 5K (sporting her CMT awareness gear throughout). In her free time, Heather enjoys reading, traveling (especially to study history), and spending time with her nieces and nephew.
Heather knows of no other family members with CMT and met no one else with the disease while growing up. One night, after a difficult appointment at the neurologist, she was looking online for information about CMT and found the CMTA. Although Heather was excited to discover a group working to raise awareness and find a treatment for CMT, she was disappointed that there were no support groups in the Cleveland area. A month later, she began to organize the Cleveland Branch, which held its first meeting in May 2012.
Heather treasures the friendships she has made in the group. “It’s great to be around people who truly understand my struggles and who are there for each other,” she says. Each month the group’s meetings include the good, the bad and the ugly, but they always include laughter. The Cleveland, OH CMTA Branch meets every other month at Panera Bread in Brooklyn, Ohio.
Before starting the group, Heather never told anyone about her CMT or showed anyone her AFOs. Meeting others and starting the group gave her new confidence, though, and she now proudly wears her CMTA gear. She even met one of her good friends when she walked into a doctor’s appointment wearing a CMTA shirt. The girl checking her in said, “I have CMT too.” Soon after that, the two became close friends.
Heather is so grateful to have the CMTA in her life as well as all of the friends she has made in by being a part of this wonderful community. In the future she hopes for a world without CMT!